New Diagnosis

Hi all...I have been on the board for 5 years..had w surgeries but went to see a new doctor at Duke that mentioned that I may have arachnoitis. After researching it, it worries me. I had an injection 2 month ago and am in so much pain tonight. It worries me about my future. Can anyone help with suggestions, things to do??? Help!

Hi, I am very sorry to hear this...and I do remember you from the "back problems" board....sounds like you have never stopped having issues and are still in pain.

The first thing I would suggest is to try to nail down the diagnosis, which can be difficult to do. Many spine surgeons seem to have only a passing knowledge of it and push the idea that it is "rare" and "not to worry about it."

Arachnoiditis can be a debilitating problem. It is important to learn whether you are affected as it would determine what future treatments or procedure you can have going forward.

Hi all...I have been on the board for 5 years..had w surgeries but went to see a new doctor at Duke that mentioned that I may have arachnoitis. After researching it, it worries me. I had an injection 2 month ago and am in so much pain tonight. It worries me about my future. Can anyone help with suggestions, things to do??? Help!

Hi Alida, I remember you from the back board too and hoped you were doing better as well! I have adhesive Arachnoiditis and I'm very sorry to hear this news and truly hope that you don't have it and I understand how scary it is to read about. I had it appear for the first time on MRI in 1988 but was never told by any dr until 2012 and I had never heard of it so started researching. But the NS's I saw ordered lumbar MRI's with contrast and said I had spinal nerve clumping and adherence of the cauda equina part of my spinal cord to my dura. Because I had had 4 back surgeries, myelogram, epidural anesthesia and epidural steroid injections it's impossible to know which one or combination caused it. My main symptoms are severe unrelenting back pain, feeling of gnawing pain, feeling of fire on my back or electricity, inability to stand/ sit/ walk for any time over about 15 minutes, my feet and legs are numb up to my knees but that is after progression in the last 2-3 years. I feel sensations of water trickling down my back and legs, intense electrical shocking, muscle cramps like Charley horses and some twitch type jerking occasionally. I was diagnosed after the NS saw on my MRI with contrast I have tethered cord, nerve root clumping inside my thecal sac and the scarring down of those nerves to my dura and after he did a thorough neurological exam and took my history. The 3 neurosurgeons i saw all said the only thing to be done was pain control and to avoid all invasive spine procedures in the future. However, one recommended an intrathecal pain pump for pain control and another recommended a spinal cord stimulator for pain control and another to have pain management dr control the pain. So far my pain dr still recommends we stay with oral pain meds and I take lyrica and it helps me to feel my feet better so I can balance to walk and it lessens my nerve pain and neuropathy symptoms. It is important to know, if possible, when the inflammatory Arachnoiditis process began because there is a protocol recommended by some drs to start IV steroids within the first 6-12 months to try to stop or lessen the damaging effects of the inflammatory process. It helps me to take hot soaking baths some with Epsom salt and lying down often for a few minutes helps to relieve some of the pain and balances the spinal fluid level and reduces pressure. This sounds crazy but it works for me when I feel the electricity feeling building up in my body I grab metal like my stainless faucet and it instantly relieves it! I know. Weird! But it works for me!

How are you doing? Did you ever have a further diagnosis of arachnoiditis?

I guess I didn't mention it is my other post but I was told I had arachnoiditis by a well-known spine surgeon. When I mentioned it to "my" surgeon, he said he so no signs of it...nor did the other spine surgeons I went to for opinions. So I decided to ignore what the first guy said! I went on to have a three level fusion with "my" surgeon and it resolved my pain and other symptoms, so I never pursued it.

Sorry, its been a while since i responded. I was doing well up until a few week ago. I have a new grandson and i think the lifting has caused another herniation. I have not been back to my doctor but called my Duke doctor. All he could recommmend was a spinal chord stimulator. Ugggh..any thoughts on that? I have heard good and bad on it but that must make some great bucks on it cause thats all they want to recommmend. It is frustrating cause it seems that every doctor is out for their own profit. Thanks for any insight or suggestions. Again, i apologize for not responding....may need to go to Chicago!!!

Hello! I don't check into this board very often, so missed your post.
I didn't know you were old enough to have a grandchild! Congrats! I only have one and he is 27 months old already.

I am the wrong person to ask about a spinal cord stimulator. However they do serve a purpose for some people. Just don't let anyone implant one without fully investigating the side effects. Pain Management docs now offer them so quickly, sometimes even before any surgery has been done, and it is presented like it is no big deal to try it out.

Frankly with the possibility of arachnoiditis, I wouldn't think surgeons would want to do anything close to the spinal canal.